Transitioning from a Regular Life to one with an Invisible Illness

Monthly Archives: July 2013

It’s so hard to have any type of normal life when you are dealing with a chronic health condition that drains your body’s energy like a smartphone drains its battery.

But how do you stay sane and true to who you are when you are a prisoner of your body. Moments of regular interactions with my friends are very rare and resemble nothing like they used to be. My birthday is coming up and it should be a time for celebrating with others, but instead I’m very nervous about how I’m going to survive the week. Several close friends and family members are lining up some times to take me to lunch or early dinner and all I’m thinking is how am I going to get through this without crashing. How do I strike a balance between trying to enjoy some normal celebrating and my extreme physical limits?

I live my life (or really more like function daily, not much living going on lately) within extreme boundaries. In order to avoid a crash, I am very strict about the number of steps I take each day and the activities I do. But this is very challenging and sometimes I think having occasional days of normalcy are worth the crash, but other days I’m not so sure.

Getting together with friends makes my spirit happy, but not my body. Is extreme fatigue and overwhelming pain the price I have to pay in order to enjoy a little slice of life? Is having a birthday dinner with a special friend worth a day or 2 resting in bed. These are the questions I continually have to ask myself. I hate being alone so much, but I can’t be around others as I pay a steep price for any type of social activity. The days of lonliness and of quiet time do take a toll on my mental state, as I was a very social and inquisitive person in my healthy life.

So is it better to punish my physical being or my emotional being? I don’t have the answer to this question and it’s one that torments me every single second of every single day.

When you are living with a chronic condition, there are many things that you could be jealous of if you look at what other people have and how their lives are proceeding. You can get caught up in the trap of thinking about all the things you don’t have and wish you did have, starting with HEALTH, then the ability to make choices in your life, to be able to go out and socialize without counting your steps until your next crash, having the mental capacity to work and be productive and also to be able to spend money on things you want and not just need to survive.

I don’t think about any of these things when I compare my life to my friends and family. The one thing I am envious of is the ability to get a good night sleep. I can’t sleep and without sleep a normal healthy person can’t function, so how can someone who is ill and in pain and exhausted from the pain be expected to function in society, when sleep does not come naturally.

The process for trying to go to sleep is very laborious and people in my life don’t really know the full extent of it. I have always had an active mind and that is one of the things that is so hard to shut off when it’s time to go to bed. The inability to sleep is also a side effect of my illness.

My nightly wind down routine starts about 2 hours before I actually attempt to fall asleep. I turn off the ringers on my phones, shut off the computer and don’t connect with the outside world. Then I try and watch mindless television for an hour or so. I also take the pill of the month as the doctor’s keep rotating sleeping pills or other off label medicine to attempt to help me fall asleep. I haven’t had much luck with the traditional sleeping pills, so I’m thankful my doctors are trying creative ways to help. After the pill, we need to apply a nasal strip, as I have terrible allergies. Now, the televisions gets closed and the sleep mask goes on and so does the sound machine, to drown out any and all sounds. Oh, I forgot to mention the blackout blinds get pulled down too.

And now, I lie down and hope that sleep comes quickly or comes at all…. Even when I do sleep a few hours, I never feel rested or refreshed and waking up every hour or so to shift position because of the intense pain, just adds to the problem.

I will happily report that last night my routine worked and I was able to get a few hours of sleep, that is until my inconsiderate upstairs neighbor started making loud banging noices in the wee hours of the night.

Hello everyone. I know I’m new to the blogging world and haven’t been around this past week, but unfortunately that’s because of a side effect of my illness. I have had the worst “Brain Fog” for the past few days. It is as if you’re brain is mush and the simplest idea to comprehend isn’t possible. A haze takes over your brain, just like when there is a foggy day, and you can’t see anything in the distance.

I sat down on several occasions to try and formulate a post, but wasn’t able to put together two sentences. Physical energy and mental energy go hand in hand and you really can’t function without either.

The fog is lifting alittle today and I just wanted to say Hi. I hope my Followers understand and will stop back later in the week, when I hope to be able to really post. But for now, I still feel like one of those old fashioned television sets from the 50’s, where the gray matter would appear on the screen when the programming was finished for the day.

Sometimes I feel as if my life is like a Shakespearean tragedy and on other days I feel like I could be an episode on “Seinfeld” (In fact some of the things that have happened to me have appeared on Seinfeld, but that’s for another post).

At the moment, I am trying to find joy in very little things and living life in small quantities.

Most people don’t take the time from their busy life to see the simple pleasures because they are constantly getting bombarded with information from a smartphone or tablet. I used to be like that, but for now multitasking or even having a conversation with more than one person at a time creates concentration problems for me.

I am learning that I must be willing to let go of the life I had planned, so that I can enjoy the life that I have waiting for me.

I am constantly pausing and celebrating the little things, because right now that’s all I can do. It is very important to be grateful for all the things that you take for granted because they could be gone in an instant. I used to be able to walk 5 miles at a time, now I struggle to walk 300 steps.

Look for the little treasures in your life and in each and every day. Celebrate your life, no matter what path you currently find yourself on.

Today, it is about 100 degrees in NYC and I am very grateful that I am able to stay indoors in an air conditioned apartment and not have to stand on a 110 degree subway platform.

There is life beyond my window and I hope to be able to participate in it again, but for now, I will have to accept the role of casual observer. I spend many hours looking out my window at all the people going about their daily lives….doing chores, walking their dogs, laughing and having fun… and I imagine what life will be like when I too can do these things again.

For now, wonder is all I can do, as I suffer with a chronic condition that drains my energy, but not my spirit.